The learning curve is steep for parents who learn their child has been diagnosed with a brain disorder a reality that many find incredibly daunting. Faced with all the unknowns and unanswered questions, their journey forward can often be overwhelming.
New challenges await both child and family as the formal education process begins, or picks up again after a brain injury. "No two sets of circumstances are ever the same, but there are some universal strategies for helping families get to a healthy place so they, in turn, can effectively support their child who is becoming a student," says Gary Pace, Ph.D., BCBA-D, Senior Vice President of Neurorehabilitation Services at May Institute. Dr. Pace also serves as Supervising Psychologist for the Institute's school for children and adolescents with brain injury and brain disorder in Brockton, Mass.
Dr. Pace has worked with children who have suffered traumatic and acquired brain injury and brain disorders for more than 25 years. He offers these tips on how parents can most effectively focus their energies throughout their child's education.
Know what works. Applied behavior analysis (ABA) is highly effective in meeting the educational and behavioral needs of children with brain injury/disorders. ABA is a methodology that uses scientific interventions and facilitates the development of language, social interactions, and independent living. It is individualized for every child and includes teaching in small steps, using positive reinforcement, prompting, and many opportunities for practice. Educators and clinicians collect data to assess progress and to make frequent revisions and modifications, as necessary. They work particularly hard to set the occasion for positive behavior. This means focusing on those things that make it easier for the student to learn and to avoid problem behaviors.
Avoid setting up expectations for a specific outcome. It is often impossible to predict how the human brain will compensate for the deficits involved with many brain disorders or injuries, or what the timeline will be. Brain injury or disorder is often complicated by other associated conditions, multiplying the number of factors influencing a prognosis.
Children will mature and develop at their own pace. Being prepared to accept the unknown enhances your ability to "be in the present." It also gives you more energy to celebrate the day-to-day victories that are so important to all children.
Your child's success is tied to your success. The challenges of managing the day-to-day routine can overwhelm your emotional, mental, and/or physical resources. When you sense that you are losing the ability to function effectively as a spouse/partner, parent or employee, it's time to reach out to extended family, your social network, and community and professional resources. People close to you generally want the opportunity to help; so let them.
One of the most important goals for your child is to be able to generalize classroom behavior in home and community settings. The health and stability of the family unit plays an important role in achieving this milestone and vice versa.
Respect each other. Just as you make allowances for the child with the brain injury or disorder, allow for the differences in the way each member of your family communicates and processes the events and emotions that come from caring for a loved one with special needs. No one's method of expression, or need, is any more or less valid than another's. Recognizing and responding to the needs of the entire family will be a valuable asset in teaching your child important social skills and values.
Follow your gut. No one knows your child better than you do. Maintaining strong communication with your child's teacher/provider will help to ensure that your concerns and questions are consistently reflected in your child's individual education plan (IEP).
About May Institute and the May Center for Education and Neurorehabilitation
The May Center for Education and Neurorehabilitation, based in Brockton, Mass., is one of only a few pediatric programs in the U.S. that focuses on both education and rehabilitation of children and adolescents (ages 5-22) with brain injury or neurological disorders.